I too have negative blood work for lupus and was dx with three different skin biopsies. I have no thyroid because it was removed. I have no female organs because they were removed and I was dx with Fibromyalgia first. Over the years of trying to be Diagnosed things kept happening to me and then finally the diagnosis was received. However the 25 year long journey was quite frustrating. They would tell me I had SLE but would not give me the final diagnosis. I too wanted answers but figured out that if the doctors where treating the Symptoms of SLE, they where treating the lupus, and therefore did it really matter that I didn’t have the diagnosis. The treatment is all pretty much the same for most of us with SLE, it just depends on the different combination of medication that works for each of our symptoms. So rest your mind to the fact that if they are treating you for the symptoms they are treating the lupus.
We could be twins. My severe symptoms didn't begin until about 10 years ago, however the 5 continuous years of lupus fog, sun sensitivity, constant cold (that's such a pain), and continual high urine protein. That should have been the kicker. My Rheumy couldn't believe that, after looking at my records, that no one followed up on the protein. I had a grand mal seizure in 2002, back injury in 2001 with several surgeries, '95-2000 several skin grafts to remove patches of staph infected sores. Every one of these times my blood pressure was through the roof (indicative of kidney problems).
If you are having continuing high protein in your urine tests, INSIST on follow up. Your kidneys are the number one organ at risk (according to my doc) and should always be monitored. A biopsy is virtually painless and the results are very fast...within a week, usually. By my regular docs not following through on the protein issue, my kidneys are severely damaged. I was within weeks of complete kidney failure by the time it was discovered.
As Ann says, some people test both pos. and neg. My Rheumy thought that as my lupus began to get somewhat under control it may change to positive however after a year, in addition to the 10 add'l years prior, she is sure that I will never show positive.
I am glad that you found this site as well. Most of the time you will get good advice, but please always check with your doctor before you change any of your treatment.
Good health.
hugs,
DeAnne
Tootles said:
DeAnne .. thank you for writing ... I, too, have been ANA negative each time (blood drawn every 3-4 weeks), however SED & CRP are high and protein in kidneys are 300 - doing second test this week. I have R/A, as well, or P/A, depending on the doctor asked .. or both (which is rare), however, I have symptoms of both so can understand their confusion. I did a really stupid thing, questioning the Lupus since I am still showing neg ANA. When I am not feeling well, I get extremely cold (from inside out); I live in FL; Sunday I decided to sit out in the back yard and relax in the sun for 15 minutes with no hat, short sleeves (again, I was freezing) ... it took about 15 minutes to warm me up. I thought since the sun is such a negative factor for Lupus, and I have a negative ANA test, maybe it won't bother me (have avoided the sun for so now because just a little makes me so tired). Well, it started Sunday night and here I sit Weds at 4:00 am, so much muscle pain shooting everywhere; severe join pain everywhere, skin hurts again, headache will not go away, completely fatigued, etc., etc., etc. no rash (BTW, I do not have typical malar rash, although I turn bright red/purple on cheeks when overheated or in sun even a little). So, I will forge ahead. I did my sun test, albeit not such a bright idea. Not sure where it leaves me. Still doing the 24 hour test again this week and more blood work next week. Starting Plaquenil in two weeks (Rheumy I decided to keep says it treats R/A and Lupus even though he has not officially told me I have it yet), since I cannot take MTX. Am looking forward to the Plaquenil. Was awake and decided to write. I know that whatever I have I have had for years and years ... I can remember my sons playing basketball and have to walk to the gym at Disney in the middle of summer; I would actually have to leave the gym, find a bench and lie down in the shade; this happened multiple times and was years ago.... I am so thankful for this site.
Thank you, Deenie ... after I wrote above I thought all of you would think I was nuts for intentionally putting myself in a dangerous spot by being in the sun which I have avoided now for quite a few years .... but if It did not bother me, I would assume likely it is something other than Lupus. Hope you understand and thank you for writing back :) Dee
Dewing3569 said:
I too have negative blood work for lupus and was dx with three different skin biopsies. I have no thyroid because it was removed. I have no female organs because they were removed and I was dx with Fibromyalgia first. Over the years of trying to be Diagnosed things kept happening to me and then finally the diagnosis was received. However the 25 year long journey was quite frustrating. They would tell me I had SLE but would not give me the final diagnosis. I too wanted answers but figured out that if the doctors where treating the Symptoms of SLE, they where treating the lupus, and therefore did it really matter that I didn't have the diagnosis. The treatment is all pretty much the same for most of us with SLE, it just depends on the different combination of medication that works for each of our symptoms. So rest your mind to the fact that if they are treating you for the symptoms they are treating the lupus.
LOL Ann ... I don't think I am going to go out in the sun and try it again just for a positive result. I say that, but if I get frustrated enough, I just may :). Thank you, my friend! Dee
Ann A. said:
In winter my ANA is usually negative. In the spring, summer, and early fall I can change it from negative to positive with about 20 minutes of sunlight exposure.
Deanne: Question ... you have the "cold" as well, yes? Is it Raynaud's? Because I do not believe mine is .. I do not turn blue or white just absolutely freezing coming from within; can last hours with five blankets on me (in summer, in FL) before warming up; typically a precursor to a lot of pain. Is this you, as well?
whathappensinvegas said:
Tootles,
We could be twins. My severe symptoms didn't begin until about 10 years ago, however the 5 continuous years of lupus fog, sun sensitivity, constant cold (that's such a pain), and continual high urine protein. That should have been the kicker. My Rheumy couldn't believe that, after looking at my records, that no one followed up on the protein. I had a grand mal seizure in 2002, back injury in 2001 with several surgeries, '95-2000 several skin grafts to remove patches of staph infected sores. Every one of these times my blood pressure was through the roof (indicative of kidney problems).
If you are having continuing high protein in your urine tests, INSIST on follow up. Your kidneys are the number one organ at risk (according to my doc) and should always be monitored. A biopsy is virtually painless and the results are very fast...within a week, usually. By my regular docs not following through on the protein issue, my kidneys are severely damaged. I was within weeks of complete kidney failure by the time it was discovered.
As Ann says, some people test both pos. and neg. My Rheumy thought that as my lupus began to get somewhat under control it may change to positive however after a year, in addition to the 10 add'l years prior, she is sure that I will never show positive.
I am glad that you found this site as well. Most of the time you will get good advice, but please always check with your doctor before you change any of your treatment.
Good health.
hugs,
DeAnne
Tootles said:
DeAnne .. thank you for writing ... I, too, have been ANA negative each time (blood drawn every 3-4 weeks), however SED & CRP are high and protein in kidneys are 300 - doing second test this week. I have R/A, as well, or P/A, depending on the doctor asked .. or both (which is rare), however, I have symptoms of both so can understand their confusion. I did a really stupid thing, questioning the Lupus since I am still showing neg ANA. When I am not feeling well, I get extremely cold (from inside out); I live in FL; Sunday I decided to sit out in the back yard and relax in the sun for 15 minutes with no hat, short sleeves (again, I was freezing) ... it took about 15 minutes to warm me up. I thought since the sun is such a negative factor for Lupus, and I have a negative ANA test, maybe it won't bother me (have avoided the sun for so now because just a little makes me so tired). Well, it started Sunday night and here I sit Weds at 4:00 am, so much muscle pain shooting everywhere; severe join pain everywhere, skin hurts again, headache will not go away, completely fatigued, etc., etc., etc. no rash (BTW, I do not have typical malar rash, although I turn bright red/purple on cheeks when overheated or in sun even a little). So, I will forge ahead. I did my sun test, albeit not such a bright idea. Not sure where it leaves me. Still doing the 24 hour test again this week and more blood work next week. Starting Plaquenil in two weeks (Rheumy I decided to keep says it treats R/A and Lupus even though he has not officially told me I have it yet), since I cannot take MTX. Am looking forward to the Plaquenil. Was awake and decided to write. I know that whatever I have I have had for years and years ... I can remember my sons playing basketball and have to walk to the gym at Disney in the middle of summer; I would actually have to leave the gym, find a bench and lie down in the shade; this happened multiple times and was years ago.... I am so thankful for this site.
Hi there! I was diagnosed with SLE in 2011 after struggling with the “common” symptoms and the usual doc runaround. I have always had a negative ANA result. However, my SSA and SSB, CRP and SED rates, as well as muscle and kidney proteins are always off the charts. The Johns Hopkins lupus clinic states that roughly 20% of patients have a positive ANA and don’t actually have lupus. So, it’s not the be-all test. Don’t let a rheumy or anyone else pigeon-hole you. I was also told I have fibro, simply because its easier and the drug companies offer far more meds to treat it. I don’t have fibro. On the symptoms list I have 1 for fibro yet ALL but 1 for lupus. Lol! Some docs want you to be easy to treat and thrown meds at you instead of having to “work” at being your doctor. Good luck and all my prayers!!!
My first rheumy visit and full work up happened after another doctor ran an ANA on my that was high positive. The rheumy's blood work came back ANA negative, ruled out RA (a lot of joint issues here) but everything else was out of whack. And even though he told me first visit the diagnosis from symptoms and physical exam had him convinced I'm dealing with lupus, when the ANA was negative, he pretty much blew me off, like I was a waste of his time. After two more very brief visits, and him prescribing meds I was unable to take. I stopped going.
So yes, you can have lupus with a negative ANA. I was not flaring when that one was done. Since medicine wasn't helping, I turned to natural means to help myself, and learning more each day. De-stress, take good care of yourself, get the rest you need, eat clean and healthy, and treat symptoms by natural means. Some fresh brewed ginger root tea will do more good for your inflammation and digestive issues than anything pharmaceutical will, without any nasty side effects.
I wish you the best, and hope you stay around - good people here!
Thank you so much for sharing your stories with me. Again, it is so good to have people to talk to who understand. I, too, have changed what I eat (I will definitely try the Ginger Root tea!); eating more foods that naturally fight inflammation, etc., but am also starting Plaquenil which I am fairly excited about ... am hoping to get some relief there, as well. Hugs, Dee
Yes, always cold but I have been assured it's not Raynaud's. I am just always cold. We keep the house at 73 during the summer and I lay on a heating pad in sweats, socks, jacket and a blanket or 2 over me. Meanwhile, my husband is sweating like crazy :). I figure I can always put more on and although he could take more off, he is a bit nervous about cooking or doing house projects in the nude. That would be my preference, but well can't have everything now can we.
Think it just may be part of this disease.
Keep warm and stock up on blankets when they are on sale.
Hugs,
DeAnne
Tootles said:
Deanne: Question ... you have the "cold" as well, yes? Is it Raynaud's? Because I do not believe mine is .. I do not turn blue or white just absolutely freezing coming from within; can last hours with five blankets on me (in summer, in FL) before warming up; typically a precursor to a lot of pain. Is this you, as well?
whathappensinvegas said:
Tootles,
We could be twins. My severe symptoms didn't begin until about 10 years ago, however the 5 continuous years of lupus fog, sun sensitivity, constant cold (that's such a pain), and continual high urine protein. That should have been the kicker. My Rheumy couldn't believe that, after looking at my records, that no one followed up on the protein. I had a grand mal seizure in 2002, back injury in 2001 with several surgeries, '95-2000 several skin grafts to remove patches of staph infected sores. Every one of these times my blood pressure was through the roof (indicative of kidney problems).
If you are having continuing high protein in your urine tests, INSIST on follow up. Your kidneys are the number one organ at risk (according to my doc) and should always be monitored. A biopsy is virtually painless and the results are very fast...within a week, usually. By my regular docs not following through on the protein issue, my kidneys are severely damaged. I was within weeks of complete kidney failure by the time it was discovered.
As Ann says, some people test both pos. and neg. My Rheumy thought that as my lupus began to get somewhat under control it may change to positive however after a year, in addition to the 10 add'l years prior, she is sure that I will never show positive.
I am glad that you found this site as well. Most of the time you will get good advice, but please always check with your doctor before you change any of your treatment.
Good health.
hugs,
DeAnne
Tootles said:
DeAnne .. thank you for writing ... I, too, have been ANA negative each time (blood drawn every 3-4 weeks), however SED & CRP are high and protein in kidneys are 300 - doing second test this week. I have R/A, as well, or P/A, depending on the doctor asked .. or both (which is rare), however, I have symptoms of both so can understand their confusion. I did a really stupid thing, questioning the Lupus since I am still showing neg ANA. When I am not feeling well, I get extremely cold (from inside out); I live in FL; Sunday I decided to sit out in the back yard and relax in the sun for 15 minutes with no hat, short sleeves (again, I was freezing) ... it took about 15 minutes to warm me up. I thought since the sun is such a negative factor for Lupus, and I have a negative ANA test, maybe it won't bother me (have avoided the sun for so now because just a little makes me so tired). Well, it started Sunday night and here I sit Weds at 4:00 am, so much muscle pain shooting everywhere; severe join pain everywhere, skin hurts again, headache will not go away, completely fatigued, etc., etc., etc. no rash (BTW, I do not have typical malar rash, although I turn bright red/purple on cheeks when overheated or in sun even a little). So, I will forge ahead. I did my sun test, albeit not such a bright idea. Not sure where it leaves me. Still doing the 24 hour test again this week and more blood work next week. Starting Plaquenil in two weeks (Rheumy I decided to keep says it treats R/A and Lupus even though he has not officially told me I have it yet), since I cannot take MTX. Am looking forward to the Plaquenil. Was awake and decided to write. I know that whatever I have I have had for years and years ... I can remember my sons playing basketball and have to walk to the gym at Disney in the middle of summer; I would actually have to leave the gym, find a bench and lie down in the shade; this happened multiple times and was years ago.... I am so thankful for this site.
You are correct ... I think we are close to being twins :)
whathappensinvegas said:
Tootles,
Yes, always cold but I have been assured it's not Raynaud's. I am just always cold. We keep the house at 73 during the summer and I lay on a heating pad in sweats, socks, jacket and a blanket or 2 over me. Meanwhile, my husband is sweating like crazy :). I figure I can always put more on and although he could take more off, he is a bit nervous about cooking or doing house projects in the nude. That would be my preference, but well can't have everything now can we.
Think it just may be part of this disease.
Keep warm and stock up on blankets when they are on sale.
Hugs,
DeAnne
Tootles said:
Deanne: Question ... you have the "cold" as well, yes? Is it Raynaud's? Because I do not believe mine is .. I do not turn blue or white just absolutely freezing coming from within; can last hours with five blankets on me (in summer, in FL) before warming up; typically a precursor to a lot of pain. Is this you, as well?
whathappensinvegas said:
Tootles,
We could be twins. My severe symptoms didn't begin until about 10 years ago, however the 5 continuous years of lupus fog, sun sensitivity, constant cold (that's such a pain), and continual high urine protein. That should have been the kicker. My Rheumy couldn't believe that, after looking at my records, that no one followed up on the protein. I had a grand mal seizure in 2002, back injury in 2001 with several surgeries, '95-2000 several skin grafts to remove patches of staph infected sores. Every one of these times my blood pressure was through the roof (indicative of kidney problems).
If you are having continuing high protein in your urine tests, INSIST on follow up. Your kidneys are the number one organ at risk (according to my doc) and should always be monitored. A biopsy is virtually painless and the results are very fast...within a week, usually. By my regular docs not following through on the protein issue, my kidneys are severely damaged. I was within weeks of complete kidney failure by the time it was discovered.
As Ann says, some people test both pos. and neg. My Rheumy thought that as my lupus began to get somewhat under control it may change to positive however after a year, in addition to the 10 add'l years prior, she is sure that I will never show positive.
I am glad that you found this site as well. Most of the time you will get good advice, but please always check with your doctor before you change any of your treatment.
Good health.
hugs,
DeAnne
Tootles said:
DeAnne .. thank you for writing ... I, too, have been ANA negative each time (blood drawn every 3-4 weeks), however SED & CRP are high and protein in kidneys are 300 - doing second test this week. I have R/A, as well, or P/A, depending on the doctor asked .. or both (which is rare), however, I have symptoms of both so can understand their confusion. I did a really stupid thing, questioning the Lupus since I am still showing neg ANA. When I am not feeling well, I get extremely cold (from inside out); I live in FL; Sunday I decided to sit out in the back yard and relax in the sun for 15 minutes with no hat, short sleeves (again, I was freezing) ... it took about 15 minutes to warm me up. I thought since the sun is such a negative factor for Lupus, and I have a negative ANA test, maybe it won't bother me (have avoided the sun for so now because just a little makes me so tired). Well, it started Sunday night and here I sit Weds at 4:00 am, so much muscle pain shooting everywhere; severe join pain everywhere, skin hurts again, headache will not go away, completely fatigued, etc., etc., etc. no rash (BTW, I do not have typical malar rash, although I turn bright red/purple on cheeks when overheated or in sun even a little). So, I will forge ahead. I did my sun test, albeit not such a bright idea. Not sure where it leaves me. Still doing the 24 hour test again this week and more blood work next week. Starting Plaquenil in two weeks (Rheumy I decided to keep says it treats R/A and Lupus even though he has not officially told me I have it yet), since I cannot take MTX. Am looking forward to the Plaquenil. Was awake and decided to write. I know that whatever I have I have had for years and years ... I can remember my sons playing basketball and have to walk to the gym at Disney in the middle of summer; I would actually have to leave the gym, find a bench and lie down in the shade; this happened multiple times and was years ago.... I am so thankful for this site.
i have just had results from my rheumy no explanation on the day just a letter im going out of my mind worrying apparently my ANA has gone up from positive 1 in 320 with negative double stranded Dna antibodies and negative compliments to a whopping strongly positive 1 in 2560 is this dangerously high and also positive anti Ro and anti La antibodies . This has got me quite scared as my husband has just been diagnosed with COPD and is on a trunk load of medication actually he was rushed into hospital at my last Rheumy appointment any one give me any idea whats going on in this crazy body of mine its making me so anxious cos up until recently i was feeling quite ok and able to help Rob reasonably well any ideas or advice would be most welcome
Hi Everyone, I am looking for some information. I had the Nuclear Ab panel done, all is in normal range and the Ana Direct is Negative BUT Ant-hitone abs is 2.8 high positive . I do NOT take any medication at all except b-12 shots and Iron infusions, that is it. Why would this be so high and the Ana negative. Does anyone here have this and have ?
My symptoms are: Severe fatigue, body aches, muscle pain, , , ciatic nerve trouble, swollen lymphs, daily sore throat (2 years now), headaches, swollen hands and feet, fingers turn white when cold, cold a lot, sensitive to cold/heat, very dry eyes on medication for but doesnt help, very , hair falling out, my legs are very sensitive to touch, Iron deficient anemia, b-12 and vit d is hard to keep levels up, memory issues, slurred speech, dry mouth, I normally drink a gallon of water a day and never feel quenched, no energy, I have been having nausea the last 3 months, Most these symptoms have been over 10 years but are getting worst. All thyroid test are normal.I do not have an rashes or skin issues other then dryness
I've had a negative ANA but most criteria of Sjrogens and Lupus. Another test months later while having a flare up I tested positive for ANA. I really think that the symptoms override the ANA because of the way our bodies react from day to day